Friday, November 1, 2019

Tyler, You are Missed

We had an appointment this week with Tyler's psychiatrist to continue working on making his life better through medication and other changes.  It does seem that since lowering one of his meds, he has become a little more awake and aware, which also seems to make him a little more interactive.  His aggression has also stabilized, so maybe instead of "being in the weeds", we are simply in the rough.

Sitting in the office with Tyler and other staff, I could see Tyler wanting my attention.  This is the first time in a while I had seen him seek me out like that, so I moved close to him and gave him all the attention he wanted.

It hit me very strongly afterward just how much I miss him.  I'm not talking about in the sense that I miss the everyday interactions with him (which I do miss also), but I miss him in the sense that I imagine people with parents with Alzheimer miss them.   I miss the expressive and joyful Tyler.  I miss the Tyler that would have insisted I hold my attention to him and him alone, and the rest of the room would have had to taken a back seat.  I miss goofing off with him so much that I would get the giggles right along with him so much that I would need to apologize to those trying to talk with us. 

There may be nothing more frustrating for a caregiver that to watch a person fade away.  Sometimes that person can seem so close to the surface, and yet you can't reach them.  I want for everyone to enjoy that Tyler that I knew, and I want Tyler to enjoy being goofy and expressive, but it continues to elude us.

I don't know whether Tyler is simply hidden behind his medications, hidden behind depression, or if his brain has been so battered and bruised, that he has become lost forever.  Considering that he has been under the influence of countless medications for a quarter century, its hard to believe that his mind wouldn't have significant residual effects of this.  Surgeries have invaded his brain, and seizures have short-circuited it. 

Perhaps the worst part is the not knowing.  I want to believe that we can find the right combination of medication and circumstance that he finds that strong and cheerful persona he had so many years ago.  But it is just that...many years ago.  The regression has been like an army marching slowly toward an unknown destination.  It doesn't stop, it doesn't yield, it just consumes mile after mile. 

I told him yesterday that I missed him.  He signed "I love you" to me.  Its enough to make me continue digging in to find him, no matter where he has gone.

Be well and God bless.    Tom

Friday, October 4, 2019

The Art of Compassion

This week it was my pleasure to host a CPR class for our company's emergency response team.  This team is comprised of employees from various departments.  We do not pay them an extra salary, nor do we force anyone to become responders.  We simply open the training up to those people who want to help their fellow man in a time of need.

The response that I receive is one part inspiring, and one part depressing.  On one hand, there are the 10% of the employee population that eagerly raises their hands.  They know that they could be faced with a situation of dire and critical need, such as a severe injury or a heart attack.  Yet they have an inner compassion to protect human life.  I'm very proud of that 10%.

The saddest part is the 90% of those who are not interested in helping their fellow man in the time of crisis.  Perhaps I'm judging these folks too harshly, but many of the reasons behind their reluctance is simply a shield for apathy.  I had folks tell me that they cannot deal with "blood and guts" very well.  Who among us does??  I explain that being an emergency response person can also mean helping to obtain supplies, call 9-1-1, direct ambulances, crowd control, and other non "blood and guts" activities.  They still won't be bothered and I certainly can't force them.

My guess is that this 10%-90% ration is pretty indicative of many other things.  For instance, its common knowledge that 90% of volunteer work done for a church is performed by 10% of the congregation.  Imagine if those numbers were made to be an even 50% split what a difference would be made in our world in general.  

I believe we have come to accept that compassion is the exception instead of the rule.  We need to ask ourselves why this has happened.  Is it because society has decided that it is "too busy" to worry about the problems of others?  Is it because we have watched "leaders" who have shown themselves to openly insult, degrade, and demean others that we have accepted this as the norm?  And how much of this apathy has been adopted by our children, thus further watering compassion down for the next generation?

I'm always shocked when I'm in a class where the question is asked "how many of you are organ donors?", and only half or less of the hands go up.  It's a personal choice...yes.  But I cannot, for the life of me, think of a valid reason not to do it.  To me, this should be an absolute no-brainer.  If I die suddenly I want for others to benefit from my organs.  If I can help a blind person see, a burn victim with new skin, give an organ to someone desperately needing one, or veins for a person needing them, sign me up!  I've actually heard people say "I don't want to have someone butcher me up after I'm dead".  You're D-E-A-D...vanity should really stop there.

Raising my children has taught me many lessons in compassion.  For Tyler, we had to learn to see the world through his eyes and understand his fears and anxieties.  Even when he was being aggressive, we had to have compassion for what caused these behaviors within him.  Compassion was also a key element in how we judged the performance of a physician or medical provider.  We expected compassion from schools, buses, nurses, and anyone else who worked with Tyler.  We considered this the most minimum skill that they had to possess.

Sam is a different story.  She is a very compassionate person who has her feelings hurt when others do not treat her in kind.  Even as a smaller child, I would see her act in kind ways toward others.  I remember when she was about 5 we were at a zoo where you could feed some animals.  While other kids were jockeying to get to the best spot, Sam spotted a little girl without feed.  She asked if she could give the little girl some of hers.  I'd like to believe this was all from things I have taught her, but I know much of it is just naturally in her heart.

Lets try to remember, today and every day, that compassion is the door that opens up so many other things.  When we show compassion first, so much other great things will follow.  But unless we can grow that 10%, I think we will continue to struggle as a society.

Be well and God bless.     Tom

Friday, September 27, 2019

Tragedy in Florida

I just saw a story on social media about an 87-year-old grandmother who murdered her disabled grandson.  She was afraid of what would happen to him once she was no longer able to provide care for him.

It would be easy to pass judgement and say "how could someone do that to their own grandson?", but there is a lot to consider here.  Think about the incredible amount of failure that has to lead up to an event like this one.

The disabled man did not have parents who could care for him.  His father had died and his mother was estranged from him.  He lived at a group home during the week and was cared for on the weekends by his grandmother.  

The system must also share some responsibility.  We continually hear about the elimination of benefits for disabled adults.  We also pay caregivers a pitiful salary to care for people who need the most support.  This leads to high rates of turnover and substandard care.  The substandard care easily lends itself to turn into neglect and abuse.

Science shares a slice of the blame pie.  As I've stated in other posts, we have become adept at keeping people breathing, but have fallen woefully short matching that with tools for better quality of life.  

Perhaps grandma knows of instances of institutional abuse, or perhaps the history of the family is so sordid that he would suffer at their hands.  Whatever the case, elements around her caused her to believe that he would be better off in the arms of God than here on earth.  It isn't her choice to make, and I do not support her decision, but I can't condemn her.

If I were old and about to leave this earth, and someone showed me a crystal ball of Tyler being abused and neglected after I was gone, I'd have to think long and hard before leaving him that way.  I'm not sure that most special needs parents wouldn't feel the same way.

Its also heartbreaking to think of how the judicial system will have to decipher this.  She committed murder, and that cannot be ignored.  Hopefully she can be confined to a hospital for her remaining days as opposed to a jail cell.  Maybe the strain of caring for him became too much and she has a medically explainable loss of reasoning.  

It is heartbreaking, but also largely preventable.  To do that we must be willing to look at these failures and be willing to offer more avenues of care for disabled adults.  Within this I also make the same appeal for disabled veterans.  We have to listen very hard to this woman and understand her fears before we can understand the mind of the aging caregiver.  I'm just not sure we have the empathy it takes to do this anymore.

Be well and God bless.   Tom  

Friday, September 20, 2019

The Return of Matty

A few weeks ago I wrote about a terrific young man named Matty.  I hadn't had the pleasure of running into him for a couple of weeks.  Lunchtime is a lot better when cross paths with him.  His attitude and open heart in infectious.

I needed to fill up the gas tank today so I stopped into the local food and gas mart.  As I stood in the checkout line, in walked Matty and his caregiver.  It only took a minute for him to have me laughing.  "Hey this guy is following me around" he said as I shook his hand.  He said they were going to eat there because "I gotta give McDonalds a break!"  He said his goodbyes and bounced on to the next thing.

The cashier commented what a pleasant young man Matty is.  I agreed and said he was one of the most special people in this world.  After all, he has a positive nature that isn't fake or done for show.  He displays a simplistic and natural regard for others, which is a rare and special quality.  

I shared the blog address with his caregiver.  She seemed a little puzzled at first but I think once she sees the blog she will remember that Matty and Tyler have things in common.  I told her that there was an entry about my meeting Matty and being so inspired by him.  He smiled and thanked me again.

Its me that owes thanks to him....for being such a rare and special person that can change the trajectory of my day with a simple laugh together.

Be well and God bless.   Tom

Thursday, September 19, 2019

Sam Update

A quick update on my post from yesterday.  Unfortunately, Sam was not elected to student Senate.  As it turned out, she was among eight students who were running.  The good news is, she was seemingly ok when I arrived home.  She said she was disappointed, and she blamed me for writing a bad speech, but that she was fine.

We told her how proud we were of her for trying and being willing to pursue something she believed in.  We will take her out for pizza tonight to her favorite restaurant in the world to celebrate.  Maybe she didn't win for student Senate, but she is a winner in our hearts every time she does the right thing.

Be well and God bless.   Tom